Tomorrow is Rare Disease Day 🦓 3.5 million people live with a rare condition in the UK. The Exeter PRP Evidence Review Facility, led by PenARC’s Prof Jo Thompson Coon, developed a toolkit highlighting inequalities in care 🔗 bit.ly/4shkmFI 🧦We’re in zebra socks to support!
#RareDiseaseDay
Very much enjoyed being part of the writing team for this paper with Justin Jagosh & great to see it out: Reverse chronology quota record screening for #realistsynthesis: Fostering causally rich extrapolations with a diverse and contemporaneous sample of literature www.cambridge.org/core/journal...
Choppy...
Our latest paper is a #systematicreview of the environmental impact of dental amalgam versus alternative restorative materials including resin-based composites and glass ionomer cements: www.nature.com/articles/s41... #dentistry
The Rise of Scoping Reviews in Nursing Science: Trends, Merits, and Responsible Use www.mdpi.com/2039-4403/15...
We’re very pleased to help move forward the plans set out in the England Rare Disease Action Plan to improve the experience of diagnosis and access to services for people with a #raredisease.
Join us for #OnlyConnect25 celebrating the power of #intergenerational and inclusive practice/research - hosted at Newlyn Art Gallery, with an expedition to Potager Garden for a magical evening meal.
Get ready to connect, make, talk, wonder and look beyond the horizon to what is possible.
Graphic showing a headshot of YHEC's Mick Arber. The wording reads: Senior Information Specialist, Mick Arber. There is a quote from Mick: "The challenges you meet for each review are different each time and, usually, there's no single correct way to meet that challenge. What we're always trying to achieve is the sweet spot, the balance of robustness and efficiency that is appropriate to the particular project." The YHEC logo is in the bottom right corner.
👋 Meet Mick Arber, Senior Information Specialist at YHEC.
With 25+ years in health information and evidence synthesis, Mick brings expertise in robust, high-quality literature searching.
Read more: sites.google.com/york.ac.uk/y...
#EvidenceBasedMedicine #MedLibs
This involves thinking about systematic reviews through a hermeneutic lens involving background understanding, lived experience, practical understanding (phronesis), and interpretive activity towards a fusion of horizon between researchers and the policymaker, and other stakeholders (2/2)
In this paper we aim to show how undertaking a #systematicreview in collaboration with a policymaker can be framed as a hermeneutic process, improving relevance for policy and challenging the conventional rule following account of #systematicreviews (1/2): journals.sagepub.com/doi/10.1177/...
Menstruation & Menopause as Reproductive Justice Issues: Feminist Reflections on Activism, Research, & Policy from the Global Movement's Scottish Hub
Bettina Bildhauer & Marcy Karin
papers.ssrn.com/sol3/papers....
If you were at the #NHSConfedExpo yesterday you might have heard Kath Bainbridge talking about this in the panel session "Individually rare, collectively common: closing the health inequality gap in rare diseases"
Also, framework which maps inequities onto patient pathway to follow soon...
Our latest paper: Evidence of #inequities experienced by the #raredisease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence link.springer.com/article/10.1...
Interesting Campbell protocol - What works to increase the use of evidence for policy decision-making: A systematic review onlinelibrary.wiley.com/doi/10.1002/...
“When I started my period at 15, I passed out, threw up, was petrified about what was happening and was told it was normal.”
When world's collide - spotted in the @hayfestival.bsky.social bookshop
Naga Munchetty's important book on the women's health crisis cites our recent #systematicreview of #primarycare clinicians’ perspectives on interacting with patients with #gynaecological conditions
bjgpopen.org/content/8/1/...
Interesting blog post by Aaron Tay on the reproducibility and interpretability of academic Ai search engines musingsaboutlibrarianship.blogspot.com/2025/04/the-...
In this blog post we summarise our recent paper which uses hermeneutics to explore expert judgement in systematic reviews for policy, and explore what this means for using AI in systematic reviews.
We hope you find it considered and thought-provoking!
planeterfexeter.wordpress.com/2025/04/30/e...
'Bluesky has overtaken its flailing rival X in hosting posts related to new academic research, indicating the platform is fast becoming the go-to place for scholars to share their work.'
Excited to see our paper "Framing #systematicreviews commissioned by policymakers as a hermeneutic process" published in Methodological Innovations -- a methodological commentary which uses hermeneutics to understand how reviewers and policy teams work together journals.sagepub.com/doi/full/10....
It's Rare Disease Day. Over 350 million people live with a rare condition globally. But rare disease is poorly taught about in medical education leaving doctors unable to support their patients. So we are raising awareness amongst healthcare professionals #ShowYourStripes
The England Rare Diseases Action Plan 2025 is published today and includes an annex with a summary of our scoping review of inequities relating to diagnosis and access to services for people with a rare disease (1/2) #RareDiseaseDay2025 www.gov.uk/government/p...
🌍 Today is #RareDiseaseDay 2025!
We stand with the 300 million people worldwide living with rare diseases.
By coming together, we can raise awareness, drive change, and work toward a more inclusive and equitable future!
🔗 Read more: metab.ern-net.eu/rare-disease...
#RareDiseaseDay2025
